Update on the latest in my longterm problems with insomnia

[robysue]

My current arsenal for fighting my on-going, simmering stalemated Second War on Insomnia gets a long awaited new weapon tonight: I finally have a trial script for Belsomra (suvorexant) and I'll be trying it out for the first time tonight. I'm actually looking forward to taking it, even though I'm also a bit worried about possible side effects, particularly daytime drowsiness the next morning. The doc wants me to take the Belsomra every night for the 10 day trial (unless, of course, I wind up with some kind of unacceptable side effects). Wish me luck!

My bad sleep is currently manifesting itself by repeated wakes, most of which I don't remember in the morning. I wake up tired and not at all refreshed on many mornings, but on some mornings I do wake up feeling somewhat rested.

These nights I usually get to sleep quickly enough to prevent the BiPAP from feeling like a shot of expresso, and when the BiPAP does aggravate me at the beginning of the night, I am willing to take an Ambien before things go from bad to worse. Because of on-going aerophagia problems, I routinely turn my machine OFF and back ON almost every time I wake up at night. When I look at my data, I'm usually surprised at just how many wakes there are each night since I typically remember only 2 or 3 of them. But the machine's data indicates that I'm waking up enough to turn it OFF and back ON anywhere between 5 and 10 times a night. I seldom sleep for more than 2 hours before waking up enough to turn the machine OFF and ON. And most of my sessions are less than 90 minutes long. On a lot of nights, I have multiple sessions that are less than an hour in length. And if I go to bed a reasonable time (i.e. before 1:00 AM), the number of wakes, particularly during the second half of the night, tends to be higher than when I go to bed around 3:00. This is true even when I have roughly the same amount of time in bed. In other words, if I go to bed at 12:30 and sleep until 8:00AM, I'll have more of these middle of the night "turn the machine OFF and back ON" cycles in my data than if I got to bed at 3:00 and sleep until 10:30.

The Belsomra script is a change from the Ambien I've been taking for the last 1 1/2 years while waiting for suvorexant to win FDA approval and be marketed. During the last 1 1/2 years, my sleep doc, psychiatrist, and headache doc all have been suggesting that suvorexant would be well worth trying once it hit the market since it works in a different way than Ambien, Sonata, and Lunesta do. As they've decribed it, suvorexant works by "turning off wake" rather than "turning up drowsiness", and they hope that will help in my case.

I've been taking 2.5mg of Ambien on an "as needed" basis. "As needed" for me encompasses several things: I didn't sleep very well the previous night. I need/want to get to bed by 1:00-1:30 (or earlier). I'm wound up and having trouble shutting the brain down when I'm ready to hit the sack. I go to bed and the BiPAP wakes me up.

But while the Ambien works well enough at helping me get to sleep and it usually keeps me sound asleep for 1.5-2.5 hours, it doesn't really do much in terms of the sleep fragmentation after the first chunk of sleep. And when I take Ambien at night, I tend to still have some problems with daytime sleepiness the following day, even when it does allow me to get a nice chunk of solid sleep at the beginning of the night. In addition, I've had some problems with constipation that seems to be related to the Ambien (and the docs think that too). So while the Ambien has helped keep the insomnia monster at bay, it has not really helped me tame the insomnia monster this time around.

The hope is that the suvorexant may do a better job of minimizing some of the middle and late night sleep fragmentation that I have. Neither the docs nor I expect the suvorexant to eliminate all the wakes, but if it helps me reduce the number of wakes down to 3-4, both they and I will be pleased. I also hope that it will help me get more full sleep cycles between the wakes: On my worst nights, I have a lot of CPAP sessions that only last 20-50 minutes. Since I don't remember a lot of tossing and turning on most nights, I suspect that either I'm spending a lot of time tossing/turning and being awake without remembering it OR I'm spending a lot of time sleeping only 20-50 minutes at a time, which is not long enough for a typical full sleep cycle.

I know that on my best days (which do include days where I feel GOOD!), I tend to have 3-4 sessions, all of which are at least 1:15 long, with the longest session usually being over 2 hours in length. If the Belsomra can increase the number of these nights, I'll consider it a success.


Background information on the First and Second Wars on Insomnia
Folks who've been around as long as I have (almost five years now) know that I've been dealing with insomnia. When I first started CPAP it triggered serious insomnia problems like I'd never experienced before. The First War on Insomnia started on Dec. 2010 with a serious comittement to CBT-Insomnia and a script for Ambien with instructions to use it to prevent two bad nights in a row. The insomnia was brought under control by the time of my first CPAP anniversary, but it was never fully eliminated. My sleep remained fragile, but I was waking up feeling pretty decent most mornings and daytime functioning returned to an acceptable level.

Things started to fall pretty seriously apart as far as the insomnia, migraines, TMJ and a bunch of other things sometime in Spring 2013, and two more sleep tests + an actigraph test that summer confirmed that (a) I have moderate OSA, (b) my current BiPAP settings control the OSA quite well, (3) I have some real issues with delayed sleep phase (DSP), and (4) the insomnia was/is worse objectively than it seemed/seems subjectively: I wake up far more often than I remember and the wakes are long enough to matter in terms of how I feel during the daytime. In short, my sleep was bad and there was no clearly identifiable reason why it was bad.

That fall, my sleep doc was openly honest with me: He had no good idea of why my sleep remained so bad in spite of all the hard work I was doing to try to keep my sleep schedule to something acceptable to my job as a college professor. The beginning of what I think of as the Second War on Insomnia started around the time that my Fall 2013 semester started. In addition to many of the same CBT-Insomnia tools that were so important in the First War, I got more serious about making sure I was using the light therapy in the morning and I also had to acknowledge that if the body really prefered to sleep from 2:30 or 3:00 to 9:00ish, to try to accomodate that as best I could in terms of my teaching schedule. But the sleep doc also presuaded me to make more use of the Ambien, and he even had me taking it nightly for a couple of months regardless of whether I thought I would need it or not. We worked on tapering me back to taking Ambien "as needed" at the end of the first month on Ambien, and since then I've been taking the 2.5mg of Ambien as described above.

[Pugsy]

Wishing for you that this finally gives you much needed rest and good sleep.

[yaconsult]

Best of luck, robysue! I hope it does the trick for you. You are always sharing so much helpful information here. I hope you can get the rest and refreshment that you need.

[49er]

I wish you all the luck in the world with this RobySue. My god, you are so overdue for some success with all the hard work you have put into this.

49er

[Julie]

I wonder if you've ever looked into SAD (seasonal affective disorder) - you said your problems begin at the start of the school year, and it occurred to me that possibly if you were to e.g. use the high lighting set-up for SAD in the a.m., get your system going early, that you just might be more ready to sleep at an acceptable time by evening. Maybe a reach, but...

[robysue]

I wonder if you've ever looked into SAD (seasonal affective disorder)

Yep. I've got an official SAD diagnosis, along with official diagnoses for Delayed Sleep Phase and Insomnia as well as moderate OSA. And let's not forget that I'm also a post-menopausal woman with typical post-menopausal sleep problems in addition to everything else.

- you said your problems begin at the start of the school year, and it occurred to me that possibly if you were to e.g. use the high lighting set-up for SAD in the a.m., get your system going early, that you just might be more ready to sleep at an acceptable time by evening. Maybe a reach, but...

During the months from (roughly) late September/early October through late February/mid March I do use a large, bright SAD light in the morning for 15-20 minutes. It makes a big difference. But like so many things, it's a double-edged sword: Bright, intense light is a migraine trigger for me. And when the migraines are acting up, the SAD light will trigger a migraine. Fortunately my migraines are pretty well controlled these days, so it's not happening all the time. But in the spring, I know it's time to quit the light therapy when the light-induced headaches become a bigger problem than my sleep schedule issues.

[Madalot]

Bless your heart, Robysue! The war you wage on insomnia, as well as the other issues that go along with that and other things.

I do hope this is the ticket for you. Please keep us posted.

[Jay Aitchsee]

I hope Belsomra works for you, Robysue. Unfortunately, early results that I've read haven't been too promising. Possibly because of the FDA requirement that recommended dosage be reduced to obtain their approval (to counter residual sleepiness in some, I think).
I am looking forward to your assessment.

[SleepDisturbed]

I know you teach college math. By any chance do you teach freshman calculus? If so, your problems may be my fault. About 45 years ago, as a college freshman, I placed a fearsome curse on all freshman calculus professors. Maybe you have fallen prey to that curse!

[robysue]

I know you teach college math. By any chance do you teach freshman calculus?

Yep. Don't know how many "ex-pre meds" I'm responsible for through the years, but it's got to be in the low hundreds by now since I've been teaching freshman calculus since the spring of 1981 when I was a new grad student at the University of Illinois.

If so, your problems may be my fault. About 45 years ago, as a college freshman, I placed a fearsome curse on all freshman calculus professors. Maybe you have fallen prey to that curse!

So *that's* what is is!

And for what it's worth: I was a straight B student in freshman calculus. Calculus almost made me into a geology major. Sophomore linear algebra brought me back to the light (if you're a mathematician) or back to the dark side (if you're not.)

[SleepDisturbed]

I know you teach college math. By any chance do you teach freshman calculus?

Yep. Don't know how many "ex-pre meds" I'm responsible for through the years, but it's got to be in the low hundreds by now since I've been teaching freshman calculus since the spring of 1981 when I was a new grad student at the University of Illinois.

If so, your problems may be my fault. About 45 years ago, as a college freshman, I placed a fearsome curse on all freshman calculus professors. Maybe you have fallen prey to that curse!

So *that's* what is is!

And for what it's worth: I was a straight B student in freshman calculus. Calculus almost made me into a geology major. Sophomore linear algebra brought me back to the light (if you're a mathematician) or back to the dark side (if you're not.)

o

I squeaked by with a "C". Made me understand my talents were in other areas!

For what it is worth, I remove the curse (but only from you!). May you sleep well from this moment forward.

[Elle]

You have a great attitude and are determined. It is bound to work for you eventually. Hoping it is soon. You deserve it.